Supportive Care Needs of CaregiversRare diseaseBehavioral
What this study is
This study is being done to answer the following question: What are the supportive care needs of informal caregivers of people with Erdheim-Chester disease and other histiocytic diseases?
What's being tested
- online surveys
Intervention · BEHAVIORAL
Survey data about supportive care needs, mood, and the experience of IC's finding meaning and purpose in the caregiving experience.
Study details
- Official title
- A Study to Identify the Supportive Care Needs of Caregivers of Patients With Erdheim-Chester Disease and Other Histiocytic Diseases
- Sponsor
- Memorial Sloan Kettering Cancer Center
- Conditions
- Supportive Care Needs of Caregivers
- Enrolling
- 250 people
- Starts
- 2019-06-14
- Est. completion
- 2026-06
- Record
- View on ClinicalTrials.gov ↗
Who can join
Age 18 Years and overSex ALLHealthy volunteers AcceptedYou may qualify if
- Self-identified informal caregiver (family member or friend who provides unpaid support) for a patient with Erdheim-Chester Disease (or LCH, RDD, or JXG for the exploratory aim).
- Proficiency to complete study assessments in English, evaluated at the time of consent.
- Age 18 or over.
You can't join if
- Participant unwilling to sign consent.
- Participant unable to complete web-based assessments.
Sign in and we'll check these against your records.Full criteria on ClinicalTrials.gov ↗
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Study locations (1)
1 openMemorial Sloan Kettering Cancer Center
New York, New York, United States
- Eli Diamond, MD · Contact212-610-0243
- Katherine Panageas, DrPH · Contact646-888-8237
- Eli Diamond, MD · Principal investigator
Recruiting
Study team
Sponsor
Memorial Sloan Kettering Cancer Center
Study ID 19-213
Principal investigator
Eli Diamond, MD
Memorial Sloan Kettering Cancer Center
Have questions? The contacts above can answer them before you apply.
Frequently asked questions
The sponsor hasn't published answers to common questions for this trial.